On April 19, 2007 FBI Special Agent Tom Simon donated a kidney to a stranger named Brenda Lagrimas. The details surrounding the surgery and the story of what brought Brenda and Tom together are detailed in the early entries of this blog.

Saturday, June 9, 2007

Radio Netherlands super-smart show, "The State We're In" posted their "Episode 2" for free download in MP3 format. It is a 1 hour show that features an interview with Tom Simon (aka me) and Brenda Lagrimas regarding our Matchingdonors.com kidney match made in heaven.

Our segment begins at the 12:40 mark of the program, and lasts a little over 7 minutes. Later in the show, an evolutionary biologist tries to explain why I did what I did as if I were a chimpanzee throwing poo at the wall of my cage. Wierd.

I was able to download it into my computer (and my iPod) by following the following steps:

1. Go to the link above2. Right click on the "Listen to the Show (MP3)" link3. Choose the "Save Target As..."4. Download the MP3 file into your computer5. After the file downloads, open it in your favorite media player program (iTunes, Windows Media, etc.)

Alternatively, here's the direct link to the MP3 file. I couldn't make it work, but maybe you'll have better luck:

http://download.omroep.nl/rnw/smac/en_the_state_were_in.mp3

I'm very pleased with the way Radio Netherlands edited the program. Let me know what you think!

THERE was outrage aplenty last week when a Dutch television network said it would broadcast a reality show featuring three patients competing for a kidney from a terminally ill woman. Viewers were to send text messages to help the woman, identified only as Lisa, make her choice.

Government and health officials in the Netherlands tried to find a way to stop the show, or at least the subsequent transplant. Disgusting, people around the world said. A tasteless stunt.

Toward the end of the broadcast Friday night, it was revealed that the show was indeed a stunt. While the contestants really did need kidneys, “Lisa” was not terminally ill, she was an actress with no plans to donate one, and the contestants knew it. But by then the show had accomplished its mission: to raise consciousness about the desperate shortage of organ donors.

The whole episode pointed up a certain fuzziness about the donor debate. What, exactly, was so off-putting about the show? Was it that the premise was unethical, or just tasteless? That a terminally ill woman would choose a stranger to receive her kidney, or that she would make her choice on TV? That somehow one person — the more attractive? the more charming? — would be deemed more deserving to live?

Organ donation has long been something of a slippery slope. Until the 1980s, when the United Network for Organ Sharing, or UNOS, was established in the United States, organs from cadavers were often allocated less by objective measures of medical urgency than through personal connections and quirky judgments about which recipients were most worthy.

Now, most cadaver organs go to those on the UNOS waiting lists, with matches made on the basis of medical factors like the size of the organ and blood type, the urgency of the patient’s need, the length of time spent on the list and the distance between donor and recipient.

But since the supply of organs is much smaller than the demand, thousands of patients die each year, waiting.

Since 2001, however, organ transplants from live donors, who usually pick their recipients, have outpaced those from cadavers; organs from live donors tend to do better, too. Increasingly, desperate patients are seeking live donors — through the Internet, creative advertising, or, even on television, a development that has made some bioethicists squeamish.

“I find this kind of show tawdry, turning a serious medical decision into a sideshow, based entirely on entertainment value,” said Paul Root Wolpe, a bioethicist at the University of Pennsylvania and president of the American Society of Bioethics and Humanities, who was interviewed before the hoax was revealed.

At the same time, some transplant experts noted that “The Big Donor Show” (“De Grote Donorshow,” with the O in “show” shaped like a kidney) was in some ways similar to competitions — not hoaxes — that take place quietly, off camera.

“It’s not all that different from what’s happening on the Internet, on sites like MatchingDonors.com, where people looking for organs post their pictures and their stories, hoping a potential donor will choose them,” said Jeffrey Kahn, director of the University of Minnesota’s Center for Bioethics. “Or there was a guy in Houston who bought a billboard saying he needed a liver, and a family called after their daughter was in a car accident and said they wanted to donate to him.”

On MatchingDonors.com, which warns potential donors that it is illegal to receive payment for their organs, patients looking for a live organ donor pay $295 a month, or $595 for the lifetime of the site, to register.

In one posting last week, labeled “Grace Needs a Healthy Active Dad,” the patient describes himself as a 41-year-old self-employed geologist, “caring husband and father of a beloved 11-year-old girl,” who loves “Labrador retrievers, camping and hunting, water-skiing and Nascar racing” and does not smoke or drink.

Online or on camera, such approaches to organ donation raise concerns.

“I think we’d reject as a matter of morality and equity that the prettiest people, the people with the best story, or the ones who can pay the most, should get access to this very scarce resource,” Mr. Kahn said.

In a handful of developing nations, kidney selling is not so uncommon, and there are those in the United States who argue that such transactions should be legalized, as mutually useful exchanges between rich and poor.

Most living donors donate when a loved one is in need. “It’s traditionally viewed as acceptable for a living organ donor to designate a relative or friend as the recipient,” said Dr. Mark Siegler, director of the MacLean Center for Clinical Medical Ethics at the University of Chicago. “That’s been true since the first successful transplant in 1954. Then 15 years ago, we broadened the category to include not just those related by blood, but those with an emotional relationship. Some programs now let people donate an organ to a particular stranger.”

And some transplant programs help arrange family swaps, in which a member of one family donates an organ to a medically matched member of another family, and vice versa.

The vast majority of cadaver organs, however, are given anonymously to those on official waiting lists: in the United States, there are almost 100,000 people waiting for organs, the vast majority for kidneys. But even in America, that doesn’t mean that families never direct who should get an organ from a dead relative.

“You’re not supposed to be able to, but it happens all the time,” said Mr. Wolpe, adding that while he had no problem with a family directing a cadaver donation to a sick relative, there was a very real danger that extending directed donation to strangers could distort the system. “We don’t want a system where families can say, ‘I want to donate to a white person, or a Jewish person.’ ”

Or, for that matter, a telegenic person: adding considerations of entertainment value to an already murky area ratcheted up the concerns.

Those behind “The Big Donor Show” said from the start that their goal was to highlight the Netherlands’ acute shortage of donors and prod the government to encourage more donations. BNN, the company that broadcast the show, scheduled it for the fifth anniversary of the death of Bart de Graeff, a former BNN director. Mr. de Graeff died of kidney failure at 35, after spending years on a waiting list.

“We know that this program is super-controversial and some people will think it’s tasteless,” said Laurens Drillich, the chairman of BNN. “But we think the reality is even more shocking and tasteless.”

The shortage of donors is less acute in the European countries that have “presumed consent” to transplant organs from a cadaver, unless the deceased specifically forbade it. In the United States, though, as in the Netherlands, donors or their families must consent to organs being harvested for transplant.

Endemol, the company behind “The Big Donor Show,” has produced reality TV hits like “Big Brother,” in which contestants are recorded living together in a house, and “Fear Factor,” which features bug-eating contests and rat-filled pits.

Some people who have been live donors or have received organs from live donors said last week that a touch of that sensationalism might not be a bad thing, if it put a human face on the need for organs and on those willing to make a relatively low-risk kidney donation.

Tom Simon, a Chicago F.B.I. agent whose blog, The Kidney Chronicles, tracks his recent kidney donation to Brenda Lagrimas, a woman he found on MatchingDonors.com, wrote: “The game show thing has a certain perverse appeal to me. How many centipedes do you think I could have gotten Brenda to eat on television for her to win my kidney?”

Friday, June 1, 2007

Brenda and I recorded a great show yesterday for Radio Netherlands. It will air in the EU next week. I'll link when it posts as a podcast. The show is called "The State We're In," and it seems like a Dutch Version of "This American Life." I was amazed that the super-cool host, Jonathan Groubert (aka Ira Glass in wooden shoes), was able to perfectly mimic an American accent.

He then told me he was from Brooklyn.

I then told him the Yankees suck.

The link for the show is:

http://www.radionetherlands.nl/thestatewerein/

My episode on "Altruism" airs next week.

Also, the guys behind the bestselling book, Freakonomics, have a great blog at Freakonomics.com that has been trying to solve the kidney shortage through rational thought and open debate. My kidney donation to Brenda (and this blog) was mentioned in their regular "Freakest Links" feature. Here's the link:

Good Kidney Links

About Me

I established this blog to memorialize the tale of my kidney donation on 4/19/2007 in hopes of inspiring others to step forward and donate. If you have any questions, please contact me at simonhere at me dot com.